Week 24 (July 13)
I turned 33 years old on the 12th. It was an extremely hot day. After church, we drove into Pembroke to return a video card and I looked at computers. I’ve decided my computer is no longer worth upgrading; nothing works properly on it and upgrading doesn’t work anymore. We had a quick A&W dinner at the mall and on our way home stopped at McDonald’s for a hot fudge sundae. I must say, there was not enough fudge on my ice cream! The next day I ordered a new computer from Canada Computers.
As far as pregnancy symptoms, things are normal but I’m not handling the heat very well. I don’t remember it being this bad when I was pregnant two summers ago. I have to sleep with two fans pointed at me, and even then I’m sooooooo hot. On Friday I saw my midwife. My blood pressure was 95/55 and baby’s heart rate was high 150s bpm. I declined the glucose screening test, but peed in a cup to test for UTI. Fundal height measured at 26 cm, which Suki said is alright but she can tell I have a lot of amniotic fluid. I have gained 21.2 lbs total.
That same afternoon we attended Stacey & Ryan’s barbecue. I was commissioned to bring dessert so I made raspberry cream bars and bakery style double chocolate chip cookies. The cookies were a huge hit!
Week 25 (July 20)
Mid-week I went to Prenatal Nutrition and we made chilli. Every time I go I receive a $15 PC gift card, which is pretty awesome! The gift card actually does help with buying extra vegetables since our local grocery store is over-priced. On Thursday, our church worship team set up their instruments at the waterfront and performed for an hour. Jordan played the drums. They did great and the weather was perfect. Baby Boy was pretty active this week! He’s also sitting pretty low, by the look of my belly.
Week 12 (April 20)
I’m getting closer to the second trimester! Nausea improved this week, but I threw up my prenatal vitmain no matter what time of day I took it, even with food. I think I’ll stop taking it. The anatomy scan is booked for June 11th in Pembroke. If baby cooperates, we can find out if we are having a boy or girl! I don’t have a gut feeling for a specific gender.
On Monday I had the telemedicine conference with our genetic counselor from CHEO. I asked her if the baby’s cord blood can be used for SMA testing but she said it’s not a good idea as cord blood contains some of my DNA. So the plan is have baby’s blood drawn before we leave the hospital. I have to contact her a month before my due date to remind her, and then once we get home from the hospital contact her again so that she can make sure the test is rushed and double-check that SMN2 copies will be checked if the baby does have SMA.
So far I’ve gained 4 lbs. And my next midwife appointment is May 14th.
Week 13 (April 27)
Some websites list Week 13 as the second trimester, and some say Week 14. I’ll keep this post as “first trimester”.
My belly has popped out a bit more this week. No nausea which meant I was able to eat a better variety of food. On Wednesday I went to Prenatal Nutrition group and we made a cold tuna potato salad which was surprizingly good, not to mention filling. And I ordered a new set of unisex Aden & Anais muslin swaddling blankets (white with silver, gray, or beige stars) and a set of gray bibs.
We have picked out a boy name, and have two options for girl!
Week 8 (March 23)
Not much to report for symptoms. I’ve been able to eat food without feeling queasy afterward, but I still vomit after taking my prenatal vitamin. On Wednesday I went to my Prenatal Nutrition group at FEN. All the same girls are there.
At the end of the week I emailed Claire Goldsmith, our genetic counselor from CHEO. She wants us to have a video conference when Jordan and I return from Florida to discuss having the new baby tested for SMA. I’m interested to know if cord blood can be used or if it has to be a blood draw.
Week 9 (March 30)
Week 10 (April 6)
Florida and Kingston!
Week 11 (April 13)
During the past couple weeks, on our trip, I would feel queasy in between meals again. I had to keep snacking. Restaurant food didn’t always agree with me. But I still managed to have a good time. The most exhausting part of the trip were the full days spent at EPCOT and Magic Kingdom. When we returned to Ottawa, we drove to Kingston and stayed at my mom’s to prepare for Khloë’s burial on April 11th. That day the weather was beautiful (after a rainstorm the previous day). Afterward, we held a small reception for friends and family at the church we attend in Kingston.
April 16th marks three months that my baby girl has been in Heaven. It is the strangest feeling to be a mother but to not have a child in my arms. Even with the new baby, there will always be that blank space where Khloë should be. She is in my heart.
I also had a midwife appointment mid-week. Suki will be sending Claire a referral for the genetics appointment. My blood pressure is still low at 90/60, but Suki wasn’t concerned since it seems to go up a little at each visit. She also found the baby’s heartbeat: 160 bpm.
The latest photo:
41 weeks (September 16)
Khloë had her 9 month well-baby check-up with Dr K. She weighed 17 lb 3 oz and measured 29 inches long. What?! Wasn’t she 28 inches only a few weeks ago? I swear, this child grows overnight! I noticed her pyjamas, which she hasn’t been wearing that long, were getting tight but I thought I was just imagining the growth spurt.
I pointed out that Khloë’s yeast problem on her wrist is still an issue and now looks infected. I have to pick up a prescription for mupirocin, an antibiotic ointment, to clear up the infection. After seven days I should be able to go back to using the clotrimaderm cream on her wrist.
We also discussed Baby Girl’s upcoming vaccines. She’s eligible to receive the RSV (Respiratory Syncytial Virus) shot. RSV is a virus that spreads by coughing or sneezing and is like the common cold but can cause bronchiolitis or pneumonia, both which could be fatal for Khloë. She also needs the flu shot and then the regular 12 month vaccines. However all these shots need to be spaced out. We still aren’t certain when Khloë will be given the RSV vaccine. I’d rather not have to go to Ottawa every month to get it.
A bath in her new chair
On Wednesday we had a demonstration of infant CPR at Prenatal Nutrition. I’m not sure I’ll remember what to do in an emergency, though! The demonstration was to give us a taste of what the official St John Ambulance CPR course is like.
Later in the week we drove to the Pembroke Hospital for our appointment with Ralph. He made fiberglass casts of Khloë’s feet so that he can make the plastic AFOs for her. These contraptions are worth $1800. No, they are not made of solid gold, but of plastic. Funny, eh? Luckily ADP will cover a good chunk of that. I really hope ACSD approves us for 100% coverage.
Being fitted for AFOs (iPhone)
On Friday a respiratory tech from Kingston drove up to see us. He came all that way to fill out paperwork about the CoughAssist. The bonus was he showed us how to unlock it and change the settings.
Around 1 am Friday morning Khloë woke up crying. I discovered she had a stuffy nose and felt warm to the touch. By 5 am she wanted to be out of bed but clearly didn’t feel well. I couldn’t believe she already had her first cold of the fall season! I cuddled with her on the sofa and she ended up falling asleep for a half hour. The day before I had assumed she was teething since her cheeks were red and warm, but she didn’t register a fever on the thermometer. Turned out to be a nasty cold instead.
My mom arrived Monday afternoon. She planned to stay the week, even with Khloë sick; she was a huge help! And of course Khloë was happy to see her Oma. Oma was the lucky one who discovered the second tooth that had popped through! Teething AND a cold, brutal. In 9 months, this is her second illness and I hope she pulls through it. I’ve had to suction mucous out of her nose and mouth quite a lot and now she hates the machine. After talking with another SMA mom, I decided to use the CoughAssist as well to help bring the mucous up so it could be suctioned out. Khloë’s cough is weak and this machine helps push air in and pull air out, simulating a strong cough.
Here we go:
37 weeks (August 19)
At the beginning of the week CCAC sent an Occupational Therapist and Physiotherapist to our home to meet with Khloë. The ladies were very friendly and Khloë gave them lots of smiles. I showed the OT the feeding chair and the infant rocker chair we currently use and explained that, although they work fine right now, Baby Girl is growing quickly and will soon be too tall for these chairs. Since she can’t support her head when upright, Khloë needs to be partially reclined when sitting in either of her chairs. These chairs are meant for babies who develop into strong toddlers who can hold their heads up and don’t need extra support. The OT said she would look into finding us a tumble form chair.
On Wednesday we went to Prenatal Nutrition. In the late afternoon, Mary from Infant Development came and worked with Khloë for an hour. We agreed that she would benefit from infant massage and we will start that in September.
The most important part of the week was Khloë’s appointment at CHEO on Friday. We met with an anesthesiologist to discuss Baby Girl’s upcoming G-tube (gastrostomy) surgery. It looks like surgery will take place next Wednesday, August 27th, but we must wait for confirmation. In our original discussion with the surgeon, we were told to expect three days in the hospital for recovery and training on how to use the feeding pump. I voiced my concerns to the anesthesiologist about fasting, as it’s not good for an SMA child to go more than 6 hours without adequate nutrition–Khloë will need to fast starting four hours prior to surgery. Other SMA families advised us to have PPN (peripheral parenteral nutrition) given to Khloë, but even though I asked for it and the doctor said she would make a note about it on Khloë’s chart, I doubt she will get it. We were told that it’s not protocol at CHEO to do PPN.
The following quote, taken from the “Consensus Statement for Standard of Care in Spinal Muscular Atrophy”, is on the dangers of fasting:
Spinal Muscular Atrophy patients are particularly vulnerable to catabolic and fasting states [and] are more likely to develop hypoglycemia in the setting of fasting… Thus, it is necessary to avoid prolonged fasting, particularly in the setting of acute illness, in all Spinal Muscular Atrophy patients. Nutritional intake should be optimized to meet full caloric needs within 4 to 6 hours after an admission for acute illness, via enteral feeding, parenteral feeding, or a combined approach as necessary. Prompt postoperative caloric supplementation is recommended to avoid muscle catabolism, particularly in a child with reduced fat store.
As long as the surgery goes well, she’ll be given Pedialyte; if she tolerates that and has been extubated with no breathing issues, I’ll be able to breastfeed. If Khloë is too tired to nurse, I can give her pumped milk with a syringe. I have no idea how long she will end up going without eating if she isn’t given PPN and can’t breastfeed right away.
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On a happier note, my sweetpea has added the sounds “guh guh” and “ba ba ba” to her repertoire of baby babble. She’s being saying “mum mum mum” for awhile now but usually while upset. She even mouths it without the sound coming out, which is really cute. She also tries to copy me when I make a certain noise with my tongue. It’s hard to describe but she’s fascinated by watching me do it!